Clinical and quality of life outcomes after aortic valve replacement and aortic root surgery in adult patients < 65 years old

Selecting the optimal surgical treatment strategy in patients below the age of 65 years (i.e., non-elderly patients) with aortic valve or aortic root disease remains challenging. The objective of the current study is to summarize contemporary research on clinical and quality of life outcomes after aortic valve replacement (AVR) and aortic root surgery in non-elderly patients. Recent systematic reviews on clinical outcome after biological and mechanical AVR, the Ross procedure and aortic root surgery show that event occurrence is considerable after any type of AVR or aortic root surgery and-with the exception of the Ross procedure-survival is suboptimal. Although thromboembolism and bleeding events are more common after mechanical AVR and root surgery, these events are also considerably present after biological AVR, the Ross procedure and valve-sparing aortic root surgery (VSRR). Similarly, reoperation is more common after biological AVR, the Ross procedure and VSRR, but also occurs frequently after mechanical AVR and root replacement. Published evidence in AVR patients points to the direction of better health-related quality of life (HRQoL) outcomes with a biological solutions, while the HRQoL after aortic root surgery is limited and contradictory. This review illustrates that treatment for non-elderly aortic valve and aortic root disease patients needs to be tailored to the individual patient, considering both clinical and HRQoL outcomes as crucial factors to reach a treatment decision that best reflects the patient's values and goals in life

Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study

In response to an increased need for patient information on congenital heart disease in the Netherlands, we initiated a nationwide initiative to develop an online, evidence-based patient information portal, starting with a pilot project aimed at the subgroup of patients with congenital aortic and pulmonary valve disease. We developed an information portal that aims to (1) improve patient knowledge and involvement and to subsequently reduce anxiety and decisional conflict and improve mental quality of life and (2) to support physicians in informing and communicating with their patients. The information portal was developed according to the systematic International Patient Decision Aid Standards development process employing Delphi techniques by a multidisciplinary workgroup of pediatric and adult congenital cardiologists, a congenital cardiothoracic surgeon, a psychologist, an epidemiologist, a patient representative, and web and industrial design experts. First, patients and physicians were surveyed and interviewed to assess the current state of patient information and explore their preferences and needs to determine the focus for the development of the information portal. We found that patient knowledge and numeracy are limited, reliable information is scarce, physicians inform patients selectively and patient involvement is suboptimal, and there is a need for more reliable, tailored, and multi-faceted information. Based on the findings of these surveys and interviews, a patient-tailored information portal was designed that presents evidence-based disease- and age-specific medical and psychosocial information about diagnosis, treatment, prognosis, and impact on daily life in a manner that is comprehensible and digestible for patients and that meets the needs expressed by both patients and physicians. The effect of the website on patient outcome is currently being assessed in a multicenter stepped-wedge implementation trial. The present pilot project succeeded in developing an online, evidence-based information portal that is supported by both patients and physicians. The information portal will be further developed and expanded to include all other major forms of congenital heart disease, translations into other languages, and a public information portal to serve patients' relatives and the general public at larg

Patient information portal for congenital aortic and pulmonary valve disease: A stepped-wedge cluster randomised trial

Background In response to an increased need for patient information in congenital heart disease, we previously developed an online, evidence-based information portal for patients with congenital aortic and pulmonary valve disease. To assess its effectiveness, a stepped-wedge cluster randomised trial was conducted. Methods Adult patients and caregivers of paediatric patients with congenital aortic and/or pulmonary valve disease and/or tetralogy of Fallot who visited the outpatient clinic at any of the four participating centres in the Netherlands between 1 March 2016-1 July 2017 were prospectively included. The intervention (information portal) was introduced in the outpatient clinic according to a stepped-wedge randomised design. One month after outpatient clinic visit, each participant completed a questionnaire on disease-specific knowledge, anxiety, depression, mental quality of life, involvement and opinion/attitude concerning patient information and involvement. Results 343 participants were included (221 control, 122 intervention). Cardiac diagnosis (p=0.873), educational level (p=0.153) and sex (p=0.603) were comparable between the two groups. All outcomes were comparable between groups in the intention-to-treat analyses. However, only 51.6% of subjects in the intervention group (n=63) reported actually visiting the portal. Among these subjects (as-treated), disease-specific knowledge (p=0.041) and mental health (p=0.039) were significantly better than in control subjects, while other baseline and outcome variables were comparable. Conclusion Even after being invited by their cardiologists, only half of the participants actually visited the information portal. Only in those participants that actually visited the portal, knowledge of disease and mental health were significantly better. This underlines the importance of effective implementation of online evidence-based patient information portals in clinical practice